Some days I wonder, “Is it worth it?” It seems like everyday I wake up to do battle. A battle for the well-being of my son. Every meal, every snack, every grocery trip, specialty food stores, supplements, vitamins, everytime I clean or wash something I work to keep things as toxin free as possible and the food allergen free, nutritious, and healing – and that means from scratch with unusual ingredients! And that’s routine, then there are the other battles – the insurance company (they still haven’t paid a penny for his treatments, even mainstream allergy and GI issue treatment), the doctors, friends and society and the perception of what we are doing. Many who think I’m wrong. Battling to find or create a treatment plan that will work for him. Most days it feel like uncharted territory and for us to discover it is the only way to move forward.

The sacrifice of a social life and friends. We don’t often get together with others. Food is usually involved. Most people don’t get excited about dairy free, yeast free, gluten free, color free…do I really need to keep going? And, well, I’ve lived in a cave for 2 years – a cave called allergies, developmental delay, autism, toxins, neurotoxicity, nutrition, health, and recovery. My every waking moment dedicated to the care of my boys and research. Not exactly uplifting topics for casual conversation. Yet, I don’t have much else to talk about. I can listen. But, I nearly go insane as I listen to new mothers go on and on about how awful their life is with their colicky 6 week old baby and how they can’t sleep through the night and they are so exhausted. Yet, who don’t want any real help – just a pill to cure it.

I’ve become a conspiracy theory person (the kind I use to look at cross-eyed because I thought they were crazy, yup, that’s me now)- Big Pharma (the pharmaceutical companies) having the power to control gov’t, the CDC (Centers for Disease Control) vaccine recommendations, the AAP (American Academy of Pediatrics) who still won’t acknowledge that Autism is treatable, and the FDA (Food and Drug Administration) and what they do or don’t approve as safe, and of course the media. Yes, I’ve completely lost my trust in much of the information from these sources. Yet, this is who everyone else listens to so I feel like it’s a battle against all of them (gov’t, it’s agencies, media, pharma, mainstream medicine) plus against all of the misinformation everyone else around me believes from them and hits me with (as if I haven’t heard it and looked into it already). I try to look at these as educational opportunities the problems is – who would you believe? A mom with a kid with developmental problems or the CDC, AAP, FDA, the media, and your doctor? I know who I used to believe and lets just say, I thought the mom was craaazy. So, most people don’t really want to be educated. They like their comfortable bubble with their misinformation. Who can blame them. I’m exhausted fighting this fight and if it wasn’t absolutely necessary, if I had had any other option, I would have taken it. My options were let my child starve, feed him foods he was allergic to and watch him vomit, scream, writhe in pain, and not develop mentally, or find another way – one nobody knew about. But since I didn’t have any other option I stand and I fight not just for my son but for all those who currently have other options (reflux meds, ear tubes, nebulizers, allergy meds, seizure meds, speech therapy, occupational therapy, physical therapy, etc) and keep trying to take them, but many of their kids aren’t getting better – for the few who will seek other solutions, I fight.

A WORD OF ENCOURAGEMENT

Is it worth it? So often, I just get tired. Just plain tired. But also tired of fighting the system and seemingly everyone and everything (except my husband, of course – he’s an incredible warrior too!). Some days I just want to give up and give in – let’s go to McD’s and get chicken nuggets, fries, and some fruit punch! Let’s stop on a great summer day and get an ice cream cone! Ah, the relief not to have to pack all meals and snacks ahead of time, to stop and get a treat that wasn’t specially planned for, prepared, and saved for the occation.

My family visited a week ago – my parents and my brother and his family. The last time we had seen them (except Mom, she was down for a visit in between) was for one week around the 1st of January, so it has been just over 4 months. Other than the diet, which we have done all along, we started his new treatments in December – cranial sacral, supplementation, and a little detox (started in April).

My dad and brother both were amazed at Jordan. Dad went on and on about how Jordan would run up to him and look him straight in the eye as he was running around playing and how he repeatedly did that and kept coming back and “checking” and to see what Dad was up to, where he was, etc. Haahum, Grandpa is known to be playful and to be there one minute and hiding around the corner waiting to startle you as you come looking for him the next minute! Dad talked about how you could look into Jordan’s eyes and see him thinking and processing everything, but instantaneously, no pausing needing to think about it or work to figure things out. Just looking at one thing, got it, and on to the next, no pause, no confusion, just alert understanding. It only took Jordan a couple minutes to warm up to him when they arrived – it used to take a couple of days, and even then he would be reserved, shy, fearful, look at his cousins out of the corner of his eye and he certainly still wanted, “Mommmyyyyyyy.” Not anymore! Jordan was all about playing with his Grandpa, uncle and cousins, no reservation, no fear – Mommy, where was she anyway? Who knows? Who cares? We have a very playful, silly, loving Grandpa visiting!

My brother noticed the difference in Jordan too. He commented that it seemed like Jordan had grown a year’s worth in the 4 months since they had seen him last! Ahhh, all words that do a warring mommy’s heart good – and I have to agree with his assessment. Jordan does seem like a 2 year old now.

Is it worth it? Oh to stop and enjoy that summer ice cream cone or see cookie crumbles on the edges of his mouth 🙂 But, then I remember where we’ve been and how far he has come, and the blueberry coconut milk smoothie mustache – made at home (with some supplements added in it too) – is just great!

One of the most frustrating things about the disorders on the Autism Spectrum (anything from ADD, asthma, allergies, sensory integration disorder, pervasive developmental disorder, to severe autism) is that most all medical information declares that there is no known cause. In regards strictly to Autism, the medical community forcefully says that it is not caused by vaccines (of course the research is paid for by the pharmaceutical companies who want to sell millions of their vaccines), they spend lots of money researching genetics, but all in all, they say they do not know what causes it. Yes, genetics is a cause, but only in about 5% of cases. Well, what about the other 95%? This 95% is why the prevalence of it has exploded to epidemic proportions in recent years. It’s the same reason why allergies and sensory disorders are exploding too.

A few statistics on Autism:

1 in 150 children in the US now have Autism

4:1 ratio of boys to girls

1 in 94 boys in the US have Autism

Fastest growing developmental disability

More children will be diagnosed with autism this year than cancer, diabetes, Down’s Syndrome and AIDS combined

$100 Billion annual costs

In 10 years the annual costs are projected at 200-400 billion.

Cost of lifelong care can be reduced by 2/3rds with early intervention

A family with a child with autism will fund 3 to 5 million dollars of services throughout the lifetime of the child

Autism receives less than 5% of the research funding of most of the more prevalent childhood disorders

Approximately 1 million individuals in the US have autism

(From Generation Rescue)

Those are the currently published statistics, and some of those numbers, like the 1:150, are old. The ratio is dropping, and it’s dropping fast.

CAUSES

There are many causes. The contributing factors are different for each child (or at least the 95% of them that isn’t not genetic). But, they all come back to the same thing – toxic overload. Here are the pieces of Jordan’s puzzle that caused his allergies and PDD (pervasive developmental disorder). At least these are the pieces I’ve figured out so far, I could very well find out more in the future. In chronological order (not order of gravity of contribution to his problem).

Aluminum & Other Metals (heavy metal toxicity) – Before I knew I was pregnant, I was having horrible abdominal pain every evening and through the night. I figured out it was trapped gas and started taking antacids like crazy. Guess what? Most antacids contain aluminum. Guess what? I was pregnant with Jordan, less than 10 weeks along (but didn’t know it). There was no blood brain barrier in him yet, the metals had free access to every developing cell of his body, including his brain. We’ve all heard about the dangers of lead poisoning, the scares of lead paint, etc. Same thing, aluminum and other metals just don’t get as much media attention.

Stress & Poor Nutrition – During the pregnancy we moved and were living with family and in-laws alternately. Very stressful, poor eating habits. Also, with the birth of my first child I had 4th degree tears, causing the worst pain of my life during the following months. I was hardly able to stand or sit because of the pain, had to have surgery 4 months later to correct things, and it took 11 months before I could sit down without pain. To say the least, I was stressed about giving birth again. Stress = raised cortisol levels. Raised cortisol levels during pregnancy, especially the 3rd trimester, not good.

Yeast Overgrowth – During pregnancy I had several bouts with yeast infections. This indicated that I had poor gut bacteria and overgrowth of yeast, but I didn’t know that then and only treated the local yeast infection. During the birth process, the baby’s digestive tract is colonized with the gut bacteria from the mother. And, while breastfeeding the baby’s gut bacteria closely resembles the mother’s. Yeast overgrowthin the gut, unchecked, can lead to leaky gut syndrome. With holes in the gut, partially digested foods, proteins particularly (peptides), can enter the bloodstream. These peptides are not recognized by the immune system as food, but resemble foreign invaders such as bacteria or virus. The immune system attacks and you have food allergies. Also these peptides can reach the brain and act as opiates, contributing to some autistic symptoms – how would you act if you were high all the time? Allergies also cause inflammation throughout the body = lots of problems.

Hepatitis B Vaccine & Others – Day one of life Jordan had the hepatitis B vaccine. Guess what is in the hepatitis B vaccine? Aluminum! The known toxic dose of aluminum for a baby is 20 micrograms. The amount in the Hep B vaccine? 250 micrograms! At 2 months he was fully vaccinated with the recommended vaccines. The aluminum content? 1,875 micrograms! (from Dr. Robert Sears who gathered the data from the FDA’s data and web site). I know he has issues with other heavy metals too, it’s just not as obvious how he might have gotten them (although they are in the air, water, food, vaccines, etc) Heavy metals also cause yeast overgrowth problems and yeast actually bind onto the metals. So, until you get rid of the metals, you won’t completely get rid of the yeast problems. Metals also cause allergy problems. Also in vaccines: formaldehyde, antifreeze, arsenic. Obviously, not good things to put in a baby already struggling with so much junk in him. These early vaccines (Hep B on day 1 of life) can also cause an inflammed gut with a result similar to yeast overgrowth were proteins can cross into the blood, resulting in allergies. They also can overload the immune system creating an overactive Th2 response and underactive Th1 response.

Environmental Toxins– we’re surrounded by toxins in our air, water, cleaners, personal care products, food (pesticides, metals, chemicals, excitotoxins), perfumes, air fresheners, etc. With all the other toxins in his body, his little system quickly became overwhelmed and couldn’t clean the junk out like most of us are able to and so it just kept accumulating, wrecking havoc with normal body and brain functions.

So far, those are the pieces of our puzzle. Maybe we’ll find more, maybe not. Everyone’s puzzle will be different. But I’m satisfied that I have a good enough grasp of the causes to know the target for healing.

Cranial sacral is amazing!! I had no idea how it could help or what all it could do. Course, we have an amazing doctor who is MUCH more than a cranial sacral specialist or chiropractor, and that’s always an advantage ;). I didn’t realize in what ways and how much cranial sacral was helping until our 4th week (and 6th treatment) into it, and after we’d been away for a week and a half through Christmas and New Years.

We went to a beach house on the Alabama coast over the holidays for 1 week! That was great, what wasn’t so great was that Jordan went backward in some of his progress and even developed a couple new things he had never done before that are classic autism behaviors (although he’s not autistic) – walking on toes, flapping hands when he got really excited, and opening and shutting cupboard doors for an inordinate amount of time. Now, he only did each of these things once or twice , but I definately noticed and it really scared me. He also got really crabby and fearful. Fearful, like, if he was not being held by me he’d just scream – forget any independent playing on his own, or being able to make dinner with both my hands and arms available – no, one was always full with him, that or he would be clinging to my legs screaming. These irritable, fearful, dependent behaviors were very common and continued for many many months not so long ago, so I didn’t really notice them creap back into our lives. We attibuted it to the molds and mildew around the house, and the chlorine from the pool he was swimming in almost every day and how those were affecting him.

Come Thursday after vacation and his cranial sacral appointment. The doctor did some adjusting and stimulation…I don’t know just what…but as we were walking out of the office he said a new word (hum, hadn’t heard one of those for a week). We got outside and he bounced happily down the path – alive, alert, happy, coordinated, not clinging to me. By the time we got home he had said 3 new words! We walked through the door and he ran off to play – ran off, by himself, hmmm wow! I thought I’d check my email quick. He came up behind me where the bookshelf is and said “Read a book” as he pointed to the bookshelf!! Wow, a whole phrase, and he pointed! A month ago, he couldn’t even point at things he wanted. He would tug on my shirt and indicate a direction with his arm, but not a pointed finger! And then, he patiently waited while I finished my email (and without me holding him), whoa! If I didn’t know better, I would have thought I’d walked out of the doctor’s office with a different boy than who I went in with – a much happier, alert, active, coordinated, confident one! These great improvements didn’t stick at 100%, and there was a little regression through the following week, but I’d say overall, he retained up to 65% of these for the week.

Friday, we got the remaining test results and treatment plan from the allergy specialist and DAN! (Defeat Autism Now!) doctor. In addition to his leaky gut and systemic yeast overgrowth, it confirmed what we knew with his gut bacteria – he has lots of bad bacteria, and not much good bacteria, has lots of inflammation (from allergies), and the big one – he has heavy metal toxicity.

That brings us to his treatment plan. We’ll work on fixing them in this order: Correct his GI issues (kill yeast/heal gut/absorb nutrition), treat allergies, detoxify (chelation). So, we came home with some supplements – probiotic, antifungal, cod liver oil, enzymes, and L-Glutamine (an amino acid that heals the gut).